I was diagnosed with stage 1 invasive ductal carcinoma, Estrogen positive, HER2 negative breast cancer of the left breast on October 25th, 2021. I was 32. I had felt a lump in my breast a few months prior. I kept an eye on it but when it didn’t resolve I mentioned it to my PCP a few months later and she recommended an ultrasound. “It’s probably nothing, most likely a clogged duct,” she said. I had an ultrasound a couple of weeks later and the radiologist said, “it looks like a clogged duct, low concern for anything else, but let’s get a biopsy, just to confirm.” A month later I had the biopsy and five days later, on October 25th, 2021, I received the phone call confirming my worst fear. I had cancer. I had an approximately one centimeter tumor localized to the breast with no evidence of metastasis. After hearing the words, “you have breast cancer” the only sound I heard was my entire life shattering around me.
I had no family history of breast cancer and genetic testing would later show no genetic link to my cancer. So then, why me? I immediately began searching for an answer I would never find. Some things just don’t make sense sometimes.
The month that followed contained approximately 15 appointments with various doctors, imaging appointments, and lab draws. I met with three different oncologists, a plastic surgeon, a geneticist, had an MRI, a CT, and multiple lab draws. My world was spinning a million miles an hour but also standing still. There was so much information to gather, so many questions, and the more answers I got, the more questions I had. There were also so many unknowns. I was living in a constant state of confusion, fear, and anxiety.I thought working in the medical field would make the process easier to digest but I quickly learned oncology is a world of its own. And when it’s happening to you, all the medical training in the world doesn’t make it make sense. I was told my cancer is very treatable and I would have a greater than 95% cure rate. As a medical provider those are incredible odds and often unheard of, especially in the world of cancer but, as a patient, I couldn’t help but think of the other five percent. I was presented with a choice I didn’t know I’d need make: mastectomy or lumpectomy? Weighing the risks and benefits of each with really no “up side” to either because either way, I still had cancer, still needed surgery, and still would have additional treatments afterwards. Either way, there was still the five percent of uncertainty.
After several weeks of weighing the pros and cons, I made my decision and had a lumpectomy on December 7th, 2021. The tumor was removed as well as one lymph node. My surgeon said all went well but we had to wait for the pathology results to know for sure if all the cancer cells were removed. About a week later, I found out my surgeon had gotten narrow but clear margins. No additional surgery would be necessary. I thought I was in the clear but life threw me another curveball. Pathology found a micromet (<2mm tumor) in my left axillary (armpit) lymph node that had been removed which previous imaging had not identified. This upstaged me from Stage 1A to stage 1B. This didn’t change the overall treatment plan but was another blow after an extremely stressful couple of months.
I was told initially I likely wouldn’t need chemo because of the early staging, small tumor size, and being Her2 negative. The likely next step would be to move on to 15 rounds of radiation. All we needed was to confirm with the oncotype (a test to show the likelihood of cancer recurrence in 9 years) that recurrence risk was low and we could proceed. But with the Christmas holiday and the New Year, what normally takes seven to ten days to result took three weeks.
Despite getting Covid on Dec. 28th (), I was feeling optimistic as 2021 turned into 2022, new year, new me! I had been off work since Thanksgiving and was already planning my return for February after radiation. Then, on January 3rd, I got another blow. My doctor called as I was on a walk with my dad, nursing the tail end of Covid, and told me my oncotype was elevated and I would need chemo after all. It felt like diagnosis day all over again. An oncotype of 25 or less means no chemo. My oncotype score was 29. That equates to a 23% likelihood of recurrence. Which, at age 32, my doctor and I weren’t willing to risk. My world shattered all over again. 2022, would, in fact, it seemed, not be my year. It was at this point I began to realize there is no planning in cancer world. And just when you think you know what’s next, you don’t.
I met with my oncologist later that week and we discussed the chemo regimen and process. It would total five months of treatment. Followed by radiation and then medications. I would need a port placed, which is a deep IV in my chest for easy access and easy chemo infusion. About a week later, I had the outpatient procedure to have the port placed. They sedated me and sowed it into my chest muscle and left a visible lump under my skin where the port would be accessed.
Because chemotherapy has the potential to make it impossible to conceive afterwards, I had to decide, essentially within 24 hours, if I ever thought I’d want to have children of my own someday. As I had already had my surgery, my oncologist said we had time and it would be safe for me to go through the process of freezing my eggs. I decided to go ahead with the process as I wanted to at least have the option later in life. I met with the fertility doctor two days later and that day I started the medications. It was a two week process filled with multiple daily injections and lots of mixed emotions. I’m so fortunate I was in a position (with the help of my parents), to complete this process as, even with the chemotherapy discount, it is not cheap. The procedure was successful and 24 eggs were retrieved!
Five days later, on January 26th, 2022, I started chemotherapy. It was an extremely emotional day but thankfully my sister, Erin, got to be there with me for the whole process. She had been my medical advocate and had come to every single appointment with me since diagnosis. I truly don’t know how I would have made it through any of it without her by my side.
Every round, I would get labs drawn, then see the doctor, then have chemotherapy. I was always the youngest person in the waiting room and the youngest by far in the chemo suite. I was often met with stares and sad eyes and confusion and “You’re too young to be here!” “Yes”, I would think to myself, “I think so too!” Each session took about five hours. My first four rounds I was given a combination of two chemo drugs, including the “Red Devil.” I had this chemo every two weeks for four rounds. This left me with horrendous nausea, no appetite, severe fatigue, severely dry skin, bowel issues, chemo brain, and my biggest fear…hair loss.
My hair started falling out about two and a half weeks later and three weeks after my first dose of chemo my dad shaved my head. As time progressed, the rest of my hair fell out, including my eyebrows and eyelashes. It was jarring at first to see myself in the mirror, a painful outward reminder of my journey and one visible to others. I hated “looking sick.” But as time went on, I grew to embrace it and now quite like my short hair.
In mid-March I switched to a 12 week course of weekly chemo. Side effects were less severe but still left me without much appetite and cumulative fatigue. After my eighth round, I began experiencing tingling in my fingers, a sign of neuropathy. This was another road block of unknowns as my doctor and I weighed the risks of continuing treatment versus stopping completely, both of which terrified me. I didn’t want to be left with permanent numbness in my fingers but was also terrified the cancer may recur if we stopped early. My doctor thought it best to stop that medication and we jointly decided to switch me to yet a fourth medication for one big dose, with more intense side effects.
I was happy with this plan and on May 31st I had my last round of chemo. I got a parade from the nurses and rang the “No Mo Chemo” bell! My sister hadn’t been able to come to any other chemo treatments due to Covid protocols so I had spent my sessions alone. The week of my last treatment, Covid protocols were lifted and Erin could sit with me for my session and watched me ring the bell. It was a very full circle moment.
We celebrated with a nice family dinner and then I went home to nurse the new side effects. My side effects lifted right on schedule about two weeks later, just in time for my post chemo trip! My parents took me on a wonderful vacation to Walla Walla, Seattle, and the San Juan Islands. It was a much needed escape from “Cancer Land” and I was starting to feel more like myself. I came home and celebrated my 33rd birthday.
Right before my trip, I learned I would need 33 rounds of daily radiation. I had originally been told it would only be 15 but that tiny micromet in my armpit wreaked havoc and increased the recommended number of treatments. I started 33 rounds of radiation the day after my 33rd birthday.
The treatments took about 15 minutes and occurred daily Monday through Friday and I would also see the doctor once a week. It’s basically like getting a sunburn every day for 6 weeks, with painful red skin that eventually peels and cracks, plus more cumulative fatigue.Radiation ended on August 24th and I got to ring the bell again, this time with my parents by my side. The side effects of radiation treatment worsen for about two weeks after treatment. So despite the celebration, I continued to feel more fatigued daily for the next couple weeks. It was a fatigue like I had never experienced. My whole body felt heavy, any significant movement required lots of energy, and I couldn’t get enough sleep.
After two weeks, I finally felt the fog lift and began to feel more like myself again. The largest battle felt like it was finally behind me. But treatment was far from over.
As my cancer was hormone positive, the next step was discussing hormone suppression drugs. My options were presented as a daily oral medication and quarterly injection for the next 10 years, or a hysterectomy. Either would force me into menopause at age 33 with the typical menopause symptoms: hot flashes, bone thinning, mood swings, and potential weight gain.Frustrated I had to make the decision at all, I begrudgingly elected to move forward with the medications. I received my first injection on September 26th and will begin the oral medications later this month.
I have started the recovery process but do still have some lasting effects. My chemo brain ebbs and flows but I am much more forgetful than I used to be and often have difficulty finding words and explaining things and will often lose my place when telling a story. My ongoing fatigue makes even basic daily tasks difficult at times and recovery from simple activities can take days. It’s frustrating to not be able to do what I want to do or workout how I used to, but I will get there eventually. It’s slowly improving but it will take time and I’m trying to be kind to myself. My oncologist said it will take as much time to fully recover from treatment as treatment took. So while the biggest mountain of surgery and treatment is behind me, I still have an uphill climb to recovery.
I plan to return to work in the new year (2023 is gonna be my year!) after over a year hiatus. Thankfully my employer has been incredibly understanding and isn’t rushing me back. However, this comes with many unknowns. How will I perform after so much time away? Will I be able to keep up physically? How will chemo brain affect my work?
Survivorship is the longest part of the journey and, as fellow cancer survivors have said, it is, in a lot of ways, the hardest phase. I’m beginning to realize my cancer experience will never really leave me. I think I will always have a fear of recurrence, even if the likelihood is incredibly low. I fear they missed something or there’s something they’re not telling me, even though my doctors have taken all the necessary precautions. Even though my cancer wasn’t genetic, I fear for my sister and my nieces. I fear for myself developing other kinds of cancer. I find cancer triggers in unexpected places. I get frustrated because people still don’t understand the extent of my cancer experience and recovery. I still wonder “why me?” When I think of the multiple appointments and imaging I’ll still have yearly, plus taking medications for 10 more years I can’t help but get bummed out. Sometimes I’m downright pissed off that I had to go through this at all. I know it will get better with time, but I also know there are parts of me that will never be the same.
Through all the hardship I have endured, I have also had many positives. I have shifted my priorities in a big way. I am less concerned with trivial things and see the value in rest, slowing down, and being present. I love and appreciate my body so much more for what it’s endured. I realized work is far less important and deserves less of my time than I was giving it. As I often said through this past year, no one is on their death bed wishing they had worked more. I have strengthened relationships with my family and friends. And I have many, many new friends in the cancer world.
I will have my first post treatment mammogram on October 31 to determine if there is any remaining evidence of cancer…one year and one week after my initial diagnosis.
As my one year cancerversary approaches, I can’t help but reflect on how much I’ve endured and how much can change in a year. I don’t know what the future holds but I’m taking things day by day and trying to enjoy and appreciate every moment.
For my one year cancerversary I will be raising funds for River Discovery, a local organization that provides healing adventures in nature for cancer patients and their families. This organization helped me find a cancer community when I needed it the most. Please consider donating to this fantastic organization!